Reflecting on The Alopecia Project ten years later We cannot believe ten years have passed since photographer Daniel Regan's 'The Alopecia Project'. On 19 May 2012, Alopecia UK and Daniel held a gathering for people with alopecia at the Frameless Gallery in London in which the first exhibition took place. The work went on to be shown in other exhibitions in the UK, including the World Congress for Hair Research in Edinburgh in 2013. For many who had their photo taken by Daniel, the moment was a key one in their alopecia journey. We caught up with some of the people who took part a decade ago to get their reflections on taking part in a project that was instrumental in raising awareness for alopecia. How did you feel about being photographed by Daniel and having your alopecia visible to others? Pamela: I took part in this project unknowingly that I was still me on the inside and I learned to love myself like I hadn’t done before. I was 18 when my world fell apart I didn’t know how continue at the time but being in that room with Daniel was a memory il never forget. I hadn’t learned to understand what I was going through at the time and he made me feel so beautiful and made me feel like I mattered. Hannah: I felt very nervous. Daniel was amazing though and the group were so lovely & kind. I was used to wearing no wigs but had never been around people with the same condition. Just felt "normal" when I met everyone. Ever since then it’s always felt like a family. Kay: I was initially nervous to have my alopecia photographed and made public, however, I was in a place where I wanted to "come out" and the opportunity was too interesting and exciting to pass up! Jenny: I was a mix of nervous and excited to be part of the project, Daniel was the first person apart from my family who had seen me bald, but after I took my wig off, I felt relaxed and a sense of relief. Lorna: I was so nervous that day on the Journey to Edinburgh, but I had my good friend Kate with me. Daniel was so lovely he put everyone at ease. I have to say I was just about ready to put myself out to the world with my Alopecia instead of worrying about whispers and leaving people guessing. I had never taken my wig off in public before and certainly never been photographed without it. Massive step for me and it took me around 45 years to do it. Angie: I was SOOOO nervous but also excited to meet the other people having their photos taken on the same day as me. These were the first people I’d spoken to that also had Alopecia, so just to meet them was so comforting. I remember us chatting with Daniel and getting ready to ‘bare all’ as it were, waiting for someone else to go first and then when we’d all removed our headscarves or wigs it felt like a huge weight had been lifted. To be there with others that knew exactly how I felt. Daniel made us all feel so comfortable, and I have great memories of that day. The very start of me accepting the way I looked, and I was proud to have taken part in such an important project of awareness. Helen: I was excited to have my photo taken, I was and to some extent still am uncomfortable having my picture taken. But for the first time someone took photos of me that I actually liked. Jackie: .I was volunteering for the charity when Daniel approached the charity with his photography project idea and thought this could not only benefit others, bring great awareness and buy help produce much need publicity. Daniel was great, I actually drove to his home in north London from Cambridge. He made tea & toast - toast that had a Hello Kitty imprint on and I knew we are going to be fine! Amy: A hop on a train and a leap of faith, ten or eleven years ago I found myself having my photograph taken by someone that I hardly knew and yet, aside from the initial nerves, I felt completely at ease. It occurred to me that aside from my now husband, no one, not even my family or close friends had seen me without my wig. And to be honest, until Daniel showed me my photograph, I hadn't truly acknowledged my baldness either. Do you feel that taking part in The Alopecia Project changed your feelings or behaviour regarding your alopecia and, if so, how? Pamela: Going to see the gallery and meeting others was so inspiring. Every person and every picture displayed showed how we were all going through such a similar experience but with completely different outcomes. From this I was able to talk about my alopecia more confidently, talk to others who were struggling and make sense of something that no one had the answers to why it happened or how to fix it. Hannah: Yes. It was the turning point for me and my Alopecia. I was "new" to the condition (6 months in). I did lots more awareness & different projects through Alopecia UK. It made me realise I could totally flip it round to something positive and I really wanted to support others like I had been supported. Kay: Taking part in the project changed me for the better! Daniel portrayed the condition so thoughtfully and beautifully. My photo made me reflect on how I view myself and all the positive feedback really boosted my confidence - the self-acceptance journey began in that studio in Scotland! Meeting so many amazing people that day, and subsequently, led to me making lifelong friends, connecting with hundreds of others with the condition via social media, fundraising for AUK, taking part in a couple TVs shows to raise awareness. I've been given opportunities and met people I would never have the fortune to meet if it wasn't for having Alopecia. It makes me well up thinking about how grateful I am, bizarrely, for losing my hair. I can't imagine my life without all the people I've since met and the fun I've had taking part in events and shows! That's not to say it hasn't been without heartache, however, the highs cancel out the lows for me - I consider myself very lucky. Jenny: Seeing the photos both when I was sent them, and seeing them blown up as part of the display was a huge step in me accepting myself as I was as a bald woman. I think seeing the project in full, looking at all the people who took part made me realise I wasn’t alone, and that, although I had accepted that I had Alopecia, I knew there were so many people who could relate to what I was going through. I became more involved in the support groups as they are a real lifeline and I’ve met some amazing people through the work of Alopecia UK. 10 years on, two lots of regrowth and loss later, I look back on the experience and when I see the photos, I remind myself of how much strength it took to do it, and that although my hair loss doesn’t define me, it is part of me and has made me stronger. Lorna: The day the photos arrived, I was delighted at how good they were. Daniel’s work was by far one of the best pictures I have ever had taken. Over the next day or so I contemplated what to do with them. I took the bull by the horns and posted to Facebook as my profile. Butterflies and sickness ensued, I turned off my phone and went to bed shaking. When I woke up I was amazed and astonished at the comments of support and the kindness I received. My self-esteem had one heck of a boost that day. I was already meeting people in Scotland with Alopecia through local support here. This however just pushed my accepting of this condition to a new level. Once I accepted myself and liked myself a little more, it did not really matter what other thought of my appearance. It started a whole new chapter of this lady’s life. Angie: Taking part was massive for me. I started to remove my headscarf in some situations when I felt comfortable and was brave enough to post the photos on social media. It felt easier to ‘come out’ that way rather than in person. It gave me a huge confidence boost, I made lots of new friends via AUK that I often bumped into over the year at other events such as the Alton Towers trips and it gave me lots of opportunities that I could only dream of, if I hadn’t have taken part that day. I feel particularly privileged that it then led me to work in an industry that helps people just like me, and with other visible differences, feel better about themselves. Helen: It definitely changed the way I saw myself. I still have a box of wigs, I never wear any of them. I use a variety of tips and tricks to give me the illusion of having more hair than is actually present on my head (I have female pattern baldness). Jackie: It brought together an amazing talented group of people, many have since gone on to support the charity by volunteering, raising funds, becoming Trustees and working for the charity to further with its aims and objectives. Amy: Whilst, at the time, I found the image staring back at me difficult to process, it's something that I have treasured ever since and see it as a significant part of my alopecia acceptance. Little did we know, Daniel's collection of beautiful portraits would go on to connect an otherwise hidden community through his 'Uncovered' exhibition. To meet others with alopecia and be in a room, let alone, a beautiful London gallery, was incredibly empowering for all of us. When you completely lose your identity as you once knew it, having a beautiful portrait reflecting back at you, is such a wonderful thing. I am forever grateful to Daniel and AUK for making this happen. Do you feel the world is more accepting of those with visible differences 10 years on? Pamela: I feel like the world is a kinder place now that I can be open and honest about alopecia and everyone is allowed their own opinions. I am so proud of everyone who chooses not to wear wigs or head garments but for me it’s how I want to see myself in the mirror. I’m not ashamed of my alopecia and I don’t need a reason to wear my hair, it’s just my choice. Hannah: Definitely but there is a lot more education to be done. I think it's more "accepting" to be different. Lots more are "coming out" and feeling confident to do so. Alopecia uk has grown in strength which is incredible (so proud of guys). Health professionals (not all) need more education and access to wigs should be more accessible! Kay: No - but that isn't to say there aren't individuals out there who are non judgmental and accepting. I feel as a collective, the general public still have a huge amount of ignorance around people with visible differences. I also think it's easier for these kinds of people to voice their opinions with the popularity of social media platforms and so we often read/hear more of the negativity and vitriol. Jenny: Although there is so much more awareness and visibility of Alopecia, and definitely improvements in what’s available in terms of wigs, eyebrow and eyelash products, there still needs to be more acceptance from society in general. Overall, the experience of being part of the project was one of the best things I did, and I still love seeing all the pictures from it whenever they come up. Lorna: After that day I moved forward, supporting many and using my experiences of Alopecia to help others. I travelled Scotland, meeting so many groups of people and individuals. I did lots of alopecia awareness with Alopecia UK, got involved in trying to encourage change in the Scottish NHS, visiting the Scottish Parliament to meet SMPs. Firstly, however I went to Glasgow for the opening of Daniel’s exhibition. For me, the Alopecia genie is out of the bottle and is never going back in. I still think society has a long way to go, but in general we’re getting there. Unfortunately, there are still some bullies out there and I think that will never change. Mental heath issues are discussed more and there is more support around than in my early days. With that right support, individuals are learning to accept who they are more and deem themselves worthy. Angie: Yes, I do feel people are more accepting 10 years on, but there’s still a long way to go. I think society in general is slowly realising that there are all kinds of beauty and that there is no ‘normal’ Don’t get me wrong I still get the odd stare and insensitive comment but it’s not as often as when I first decided to ditch my headscarves for good. Now I am proud to rock the bald! Jackie: Yes, I think the message is getting across - there is always more to do, but there is an increase in awareness of altered body image, mental health and inclusion compared to 10 years ago. Thanks to individuals who take positive steps to speak out about their experiences and make like a little better for us all. The book that Daniel and Jen wrote is simply beautiful. Amy: The optimist in me really hopes so. Although there is so much progress to be made, I feel that as a society we have become more exposed to and therefore more accepting of our differences as a whole, especially within the younger generation. The 2012 Paralympic games always stick in my mind as feeling really significant in transforming our perspective towards visible differences, from seeing a disability to something of a superpower. I've definitely noticed more inclusivity within the fashion industry with models with alopecia or a buzz cut being featured in mainstream advertising. The pessimist in me feels that there is still so much progress to be made. Whilst there seems to be a culture of acceptance, there is also a counter culture of 'social media perfectionism' with an easily accessible and normalised cosmetic beauty industry aimed at uniforming our appearances. As an openly bald woman, I feel that this superficial side of society really hinders any progress being made in society's acceptance of visible differences and it can feel like a rebellion in itself just to be me. I feel disappointed at how visible differences are still the butt of a joke (the recent Oscars for example) or portrayed as 'the baddie' in films. Perhaps this is changing but the mainstream media seems stuck in the past and slow to acknowledge the damage it is causing. There is still a lack of awareness and knowledge around conditions such as alopecia, causing so much ignorance and hostility towards any kind of difference. On the whole, I believe that things are improving. Communities are connecting more and more through charities and social media and we are becoming much more visible, vocal and empowered which inevitably will have a positive impact on society. Over to Daniel to sum up: Wow. I can't believe that it has been ten years already since the project was first exhibited. This project started through meeting a new friend that lived with alopecia. I was so struck by the impact that it had on her both physically and psychologically that I knew immediately that I wanted to meet and photograph others, to share their stories. With the support of Alopecia UK I was able to connect and work with a fantastically warm community of people. It was an absolute honour and a privilege to meet with people from all over the UK to create these empowering portraits that represent the true and diverse definition of beauty. Thank you to everyone for collaborating with me! Thank you to Daniel for taking an interest in alopecia all those years ago and using his amazing talents to help raise awareness of alopecia, and thank you those who have shared their experiences with us in this blog post. Find out more about Daniel's alopecia work here.